Progress and reports

The steps involved in setting the top ten research priorities in Living With and beyond Cancer are:

1.Initial scoping meeting

We held an initial scoping meeting on 7 Feb 2017 to outline what will be involved in the process and also to identify the scope of this Priority Setting Partnership (PSP), who we should involve in the Steering Group and engage as wider Partners. We held our first Steering Group meeting on the 24th April 2017.

2. Identifying uncertainties

This can be collected via survey and possibly also harvested from literature. The Steering Group will construct a survey for patients, carers, relevant healthcare professionals and other interested individuals to submit questions. Our national survey to gather questions was open from 4th September to 15th November 2017. Thank you for those who took part and help us set the research priority. Make sure you hear about the second prioritisation survey and the final priorities, sign up to our mailing list here.

3. Refining questions and uncertainties

The responses to the survey are then collated and refined to categorise questions and ensure they are unanswered.

4. Prioritisation.

Unanswered’ questions will then be prioritised through an interim vote by all interested parties. Please visit the survey page for up to date information. The Steering Group will analyse the interim results and create a shortlist of 20-30 uncertainties.

5.Narrowing down to a Top 10.

In the final PSP workshop, participants will rank the 20-30 shortlisted uncertainties to agree on Top 10. The workshop will be facilitated by the James Lind Alliance to ensure fairness.

6.Dissemination and next steps

The Top 10 uncertainties (many cases Top 25) will be publicised widely to ensure that researchers and those who fund research really understand what matters to people affected by cancer. This project is being facilitated by the James Lind Alliance, which is part of the National Institute of Health Research. The top uncertainties will be directly reported to the NIHR Evaluation, Trials and Studies Coordinating Centre, which provides evaluation and funding of research for the NIHR. They will be promoted to many other research organizations and relevant funders in the UK. We anticipate they will directly influence future research funding calls.

We will develop the uncertainties into research questions and develop strategies around each of the priorities which will form the basis of planning around any future work in living with and beyond cancer research.

The questions that do not make the top 10-25 uncertainties are not forgotten. They will be available on the Living With and Beyond Cancer PSP website and the James Lind Alliance website.

You can read more about the process in the PSP protocol which will be available soon.